Caregiver Quality Of Life Research Articles

Sense of Coherence: A Predictor of Quality of Life in Caregivers of Cancer Patients

Background: The caregivers of cancer patients go through numerous changes in their lives, caused by the complexity of cancer care, which then influence their quality of life (QoL). In this context, the sense of coherence (SoC) has been introduced as individuals' capacity to adapt to complex situations. Objectives: This study aimed at examining the relationship between QoL and SoC among the caregivers of cancer patients. Methods: This descriptive correlational study was performed on the caregivers of cancer patients referred to a teaching hospital in Tehran, Iran. In total, 200 eligible caregivers, selected by purposive and convenience sampling from September to December 2022, completed the research instrument comprised of a researcher-made demographic-clinical information form, the SoC Scale (13-item), and WHOQoL-BREF. The data were analyzed by the SPSS 20 software. To investigate the relationship between caregivers’ SoC and QoL, first, the correlation was determined, and afterward, the significant variables were analyzed, using multiple linear regression. Results: The overall mean score of QoL among the caregivers was 52.12 ± 14.45. In this way, the highest and lowest values were associated with the domains of physical health and social relationships, receiving the mean scores of 55.19 ± 11.46 and 38.40 ± 10.08, respectively. The overall mean score of SoC was also equal to 49.71 ± 9.34. As well, the results of the study demonstrated a significant positive correlation between SoC and QoL (r = 0.585, P < 0.001) as well as its 3 domains. Considering the demographic and clinical factors, the regression outcomes revealed that SoC was a predictor of QoL in the caregivers of cancer patients (P < 0.001, Β = 0.65). Among the demographic factors, a significant correlation was accordingly observed between age, marital status, income level, employment status, and QoL and some of its domains (P < 0.05). Conclusions: It was argued that SoC could be a positive predictor and a protective factor for QoL among the caregivers of cancer patients. In this vein, it was recommended to give a boost to the SoC dimensions during oncology and palliative care via an interdisciplinary approach and a variety of interventions. Upon developing QoL in the caregivers, QoL among the cancer patients could be then promoted.

The effectiveness of case management and nursing counselling among caregivers of patients with dementia: A pilot study.

According to the data released by the Taiwan Ministry of Health and Welfare in 2021, in 2019, 235,000 patients sought medical treatment for dementia-related diseases at the National-Health-Insurance-participating hospitals and clinics for more than three outpatient visits or had been hospitalised, and the number had increased by 15,000 from the previous year (Ministry of Health and Welfare, 2021). This implies that families are affected, causing tremendous physical, psychological, and economic pressures and burdens on the caregivers and families of the patient. The estimated social cost of caring for dementia families increased from $1.3 trillion in 2019 to $2.8 trillion in 2030 (World Health Organisation, 2021). Thus, long-term care for the dementia population has become a critical issue in medical care and social services in Taiwan and worldwide. In 2017, Taiwan Ministry of Health and Welfare has been starting Dementia care policy with 10 years long-term care plan through set up dementia care centre. The purpose of this study is to investigate the effectiveness of dementia care centre for reducing the burden and improving the quality of life for caregivers of dementia patients. This pilot study adopts a quasi-experimental research design and uses purposive sampling to select in house informal caregivers of dementia patients who are part of a dementia collaborative care programme at a medical centre in the northern region and were willing to participate in this study. Upon enrolment in the study, subjects were given a pre-test, followed by a one-hour face-to-face nursing consultation and assessment after 2weeks. Subsequently, a telephone nursing consultation was conducted once a month for 3months. Two weeks after completing all counselling sessions, a post-test was administered to measure the caregiver burden with The Chinese version of the Caregiver Burden Inventory and the quality of life for caregivers with The 'Chinese Health Questionnaire CHQ-12'. After providing case management and nursing counselling, the total caregiver burden score significantly decreased from an average of 40.1 (SD=21.6) at the pre-test to an average of 38.6 (SD=21.4) at the post-test, reaching statistical significance (p<0.01). The results of this study showed that providing dementia caregivers with case management and nursing consultation services helpsimprove the overall caregiver burden (particularly emotional burden and physical burden) as well as the health questionnaire scores. However, the social burden and time burden did not improve after receiving case management and counselling among caregivers; instead, post-test scores of these aspects were significantly higher.

Is more care recipient time at home also a family caregiver-centered quality of life measure?

Time in healthcare facilities is associated with worse patient quality of life (QoL); however, impact on family caregiver QoL is unknown. We evaluate care recipient days not at home-days in the emergency department (ED), inpatient (IP) care, and post-acute care (PAC)-to understand how care recipient days not at home correspond to family caregiver QoL. Secondary data were linked to care recipient utilization data. Elastic net machine learning models were used to evaluate the impact of a single day of utilization in each setting on binary QoL outcomes. We also compared composite weighted and unweighted "days not at home" variables. Two time periods, 6 and 18 months, were used to predict three caregiver QoL measures (self-rated health, depressive symptoms, and subjective burden). In the 6-month timeframe, a single day of ED utilization was associated with increased likelihood of poor QoL for all three assessed outcomes (range: 1.4%-3.2%). A day of PAC was associated to a modest degree with increased likelihood of caregiver burden (0.2%) and depressive symptoms (0.1%), with a slight protective effect for self-rated health (-0.1%). An IP day had a slight protective effect (-0.2 to -0.1%). At 18 months, ED and IP had similar, albeit more muted, relationships with caregiver burden and depressive symptoms. PAC had a slight protective effect for caregiver burden (-0.1%). Cumulative days in all settings combined generally was not associated with caregiver QoL. Whereas total care recipient time away from home had some negative spillovers to family caregivers, the countervailing effects of unique settings on caregiver QoL may mask net QoL effects. This finding limits the utility of a single care recipient home time measure as a valid caregiver-centered measure. Considering cumulative care recipient time in individual settings separately may be needed to reveal the true net effects on caregiver QoL.

Health-Related Quality of Life for Caregivers of Children With Developmental Disabilities

Abstract Date Presented 03/21/24 This 2021 retrospective national survey of 1,549 self-reported caregivers of children with developmental disabilities provided insight into the prevalence of reported poor physical and mental health and its impact on personal activities of daily living (ADL) function. Primary Author and Speaker: Cindy W. W. Poole Additional Authors and Speakers: David Levine, Stephanie Forbert, Tessa Baker, Sydney Baker, Sarah Tindall, Blair Shelton

Anxiety and depression as predisposing factors of poor quality of life in caregivers of people with chronic conditions

Chronic diseases represent a significant public health problem, being responsible for 74 % of world mortality, with 41 million deaths per year. In the Americas, 15 million people between 30 and 69 years of age die each year due to these pathologies, and in Colombia, 76 % of morbidity is due to chronic diseases such as psychiatric diseases, hypertensive heart disease, heart disease, diabetes and epilepsy. These diseases affect not only patients but also their caregivers, who suffer physical, social, biological and mental alterations, as well as changes in their social and economic dynamics. Caring for a chronically ill person can lead caregivers to experience insomnia, depression and anxiety, due to the responsibility of meeting the needs of the sick person. It is crucial to address the mental health of caregivers and perform specific nursing interventions to prevent and manage caregiver burnout, thereby improving the quality of life for both patients and their caregivers. Anxiety and depression are common among caregivers, influenced by sudden role change, decreased free time and leisure activities, and exclusive focus on caregiving. From the nursing discipline, it is essential to develop holistic interventions that include the family and community in the care plan, improving the relationship and communication between nurse, patient and caregiver. Education and constant follow-up are fundamental tools to support caregivers and detect mental health problems early

Primary caregiver burden and undiagnosed mental health illness in out-patients with inflammatory bowel disease-A multicentric prospective survey from the IBD Emerging Nations' Consortium.

Mental health is an overlooked aspect of inflammatory bowel disease (IBD) patient care with limited data from the developing world. The primary caregiver burden is expected to be high, but has not been evaluated. We conducted a questionnaire-based survey of consecutive out-patients with no diagnosed mental health illness (n = 289) and their primary caregivers (n = 247) from 10 centers across eight countries (Bangladesh, India, Iran, Malaysia, Myanmar, Nepal, Pakistan, Thailand) of IBD-Emerging Nations' Consortium (ENC). Patients were assessed for anxiety (PHQ-9), depression (GAD-7), quality of life (SIBDQ, IBDCOPE) and medication adherence (MMAS-8). Caregiver burden was assessed by Zarit-Burden Interview (ZBI), Ferrans and Power Quality of Life (QOL) scores and coping strategies (BRIEF-COPE). Multivariate logistic regression and correlation analyses were performed to identify risk factors and theimpact on QOL in patients and caregivers. Moderate to severe depression and anxiety were noted in 33% (severe 3.5%) and 24% (severe 3.8%) patients, respectively. The risk factor for depression was active disease (p < 0.001, OR6.3), while male gender (p = 0.01, OR0.45) and medication adherence (p = 0.003, OR0.75) were protective. Risk factors for anxiety were unmarried status (p = 0.015, OR2.3), female gender (p = 0.004, OR0.41), steroid use (p = 0.016, OR2.1) and active disease (p < 0.001, OR7.97). High GAD-7 and PHQ-9 scores positively correlated with high disease activity (r = 0.55, p < 0.001, Crohn's disease; r = 0.52, p < 0.001 ulcerative colitis) and negatively with SIBDQ (r = - 0.63, p < 0.001; r = - 0.64, p < 0.001 CD; r = 0.36, p = 0.001,UC). Sixty-five percent (159/249) primary caregivers reported high burden (ZBI ≥ 21), which positively correlated with low educational status and low-income and negatively with QOL(r = - 0.33, p < 0.001). The primary adaptive coping strategy among caregivers was religion, while maladaptive strategy was self-distraction. Nearly two-thirds of primary caregivers reported high burden of care. There was also high prevalence of undiagnosed depression and anxiety in IBD out-patients. This highlights the need for patient-caregiver integrated mental-health services in the developing world.

Quality of life of caregivers of patients on home enteral nutrition

BackgroundHome enteral nutrition (HEN) patients often rely heavily on caregivers (CGs), whose quality of life (QoL) is significantly impacted. This study aimed to identify potentially modifiable factors influencing the QoL of CGs of HEN patients. MethodsA multicentre, cross-sectional study was conducted in three home nutrition centers from Jan 2021 to Jan 2022. We enrolled 90 CGs of HEN patients, collecting data on QoL (WHOQOL-BREF), depression (Beck Depression Inventory), CG burden (Zarit Burden Interview), sleep quality (Pittsburgh Sleep Quality Index), stress (Perceived Stress Scale), life satisfaction (Satisfaction With Life Scale) and financial status. ResultsThe mean age of CGs was 54.53 years, with 76% being female. 19% of CGs rated their QoL as poor, and 57% had depression. Multivariate regression analysis showed that financial satisfaction (β = 0.14, p < 0.01) and depression (β = -0.03, p < 0.001) were significant predictors of QoL (R2 = 0.6). Depression correlated with CG burden (r = 0.54, p < 0.001), poor sleep quality (r = 0.47, p < 0.001), stress (r = 0.68, p < 0.001), and financial satisfaction (r = -0.39, p = 0.001). The average monthly income per person was $663.3 and 51.2% of CGs were not satisfied with their financial situation. Lower income was correlated with stress (r = -0.298, p = 0.023). CG burden was associated with financial satisfaction (r = -0.373, p < 0.001), quality of sleep (r = 0.296, p = 0.005) depression (r = 0.54, p < 0.001), stress (r = 0.5, p < 0.001) and satisfaction with life (r = -0.389, p < 0.001). ConclusionsCGs of HEN patients face substantial challenges impacting their QoL, particularly financial stress and depression. Addressing these issues through comprehensive support systems is crucial to improve CG well-being and, subsequently, patient care outcomes.

Quality of life and family functioning 12 months after diagnosis of childhood brain tumour: A longitudinal cohort study.

The wellbeing of a child with brain tumour is affected by several factors. We present the first investigation of quality of life and family functioning in a parent and child across the first 12 months after diagnosis, examining potential factors to guide the provision of psychosocial resources to families who most need them. Data were collected from parents/carers in Queensland, Australia, from 2020 to 2023. Child (parent/carer-proxy reported) and carer quality of life was assessed across three timepoints (repeated measures analysis of variance [ANOVA]) and by five potential co-variates (mixed between-within ANOVA). Family functioning was assessed across two timepoints (repeated-measures t-test), and by potential co-variates (repeated measures ANOVA). Univariate relationships were explored with Pearson's correlation coefficient; significant relationships were entered into multiple regression models. Ninety-six diverse families were represented. Quality of life (child, carer) and family functioning did not change across time. Children from households with lower income reported worse cognitive difficulties (p=.023) and pain and hurt (p=.013) than those from a higher income. Caregiver quality of life was poorer for those whose child had received chemotherapy and/or radiation, was aged less than 4 years at diagnosis, and had a lower household income. At 12 months, caregiver quality of life was correlated with family functioning (r=-.45, p<.001), with positive adaptation being a significant key predictor (beta=-.66, p<.005). The following factors indicate a need for increased early psychosocial support: cognitive difficulties, aged<4 years at diagnosis, receiving chemotherapy and/or radiation, and low household income.

Quality of Life of the Family Caregivers of Children with the Cerebral Palsy and its Determinants: A Study from India

abstract Introduction: The responsibility of caring for a child with cerebral palsy (CP) at home can be challenging to the caregiver’s and children’s quality of life (QoL). This study was designed to assess the QoL and its determinants amongst family caregivers of children with CP. Materials and Methods: A study was conducted in a Tertiary Care Hospital in Yavatmal, Maharashtra, from March to May 2021, involving 126 participants selected through systematic random sampling. QoL was assessed using the World Health Organization QoL Brief Version scale. The data were analyzed using the statistical software, Epi Info Version 7.2. Results: The mean ± standard deviation of the overall QoL of family caregivers of CP children was 66.7 ± 1.44. The study found a significant association of QoL with the age of the caregiver, residence, education, socio-economic class, total number of children, health insurance and accessibility of services. Conclusion: More than half of the study participants exhibited low overall, physical, social and environmental QoL, influenced by various determinants.

Death anxiety among caregivers of patients with advanced cancer: a cross-sectional survey.

This study aimed to investigate death anxiety (DA) in caregivers of patients with advanced cancer and identify associated factors in the context of Chinese culture. Caregivers (N = 588) of advanced cancer patients in a tertiary cancer hospital completed anonymous questionnaire surveys. Measures included the Chinese version of the Templer Death Anxiety Scale (C-T-DAS), the Quality-of-Life Scale, the State-Trait Anxiety Scale, and the Social Support Rating Scale. Data were analyzed in SPSS (IBM Corp, Armonk, NY, USA) using descriptive statistics, Pearson's correlation test, and linear regression. Respondents returned 588 (93.03%) of the 632 questionnaires. The total C-T-DAS score was 7.92 ± 2.68 points. The top-scoring dimension was "Stress and pain" (3.19 ± 1.29 points), followed by "Emotion" (2.28 ± 1.31 points) and "Cognition" (1.40 ± 0.94 points). In contrast, the lowest-scoring dimension was "Time" (1.06 ± 0.77 points). Factors associated with DA (R2 = 0.274, F = 13.348, p < 0.001) included quality of life (QoL), trait anxious personality, social support, caregiver length of care, caregiver gender, and patients' level of activities of daily living (ADL). Our results demonstrated high levels of DA in caregivers of patients with advanced cancer. Generally, female caregivers and those with low social support had high DA. Caregivers caring for patients with low ADL levels or with a low QoL and trait anxious personality reported high DA. Certain associated factors help to reduce caregivers DA. Social interventions are recommended to improve the end-of-life transition and trait anxious personality as well as quality of life for caregivers.

Medical and nursing interventions influence a caregiver’s willingness to continue home hemodialysis: a multicenter cross-sectional survey

BackgroundIn Japan, home hemodialysis (HHD) has several benefits, including a favorable prognosis, enhanced quality of life (QOL) of patients, and cost-effectiveness. However, the caregiver’s burden in assisting patients on HHD is significant, which influences their decision to continue HHD. This study focused on the relationship between medical and nursing interventions, caregiver resolve to continue HHD, and caregiver quality of life, aiming to create support strategies for caregivers.MethodsA multicenter cross-sectional survey was conducted on caregivers of patients on HHD from 150 HHD facilities in Japan. The caregiver’s intent to continue HHD was assessed using a four-tier response scale that evaluated aspects such as caregiver–healthcare provider meetings, caregiver breaks, treatment discussions, difficulty in HHD initiation, and post-initiation medical support. Caregiver QOL was evaluated using the Short-form Health Survey, eight domains (SF-8). Statistical analysis involved χ-squared tests, independent t-tests, and propensity score matching.ResultsThe study achieved a caregiver participation rate of 55.6%. Results indicated that caregivers who were inclined to continue HHD were significantly more likely to receive respite outpatient dialysis and had a better understanding of HHD mechanics as explained by healthcare professionals; however, propensity score matching revealed limited generalizability. There was no significant difference in the SF-8 scores before and after propensity score matching among the groups.ConclusionsThis study highlights that there are a small number of caregivers who have little motivation to continue HHD and emphasizes the crucial role of support from healthcare professionals. Comprehensive support, including respite dialysis and detailed HHD information, may affect HHD sustainability.

Family Support of Older Caregivers: Factors Influencing Change in Quality of Life.

Understanding factors that can improve the quality of life (QOL) of older caregivers of people with intellectual and developmental disabilities (IDD) is important in broadening participation in family empowerment interventions. The purpose of this study was to identify the factors influencing the QOL of older caregivers (50+) of adults with IDD who participated in a peer-mediated state-wide family support project. The research study used a quasi-experimental research design grounded in the family quality of life (FQOL) framework, with pretest and posttest data gathered from 82 caregivers. Correlation and regression analyses were conducted to identify factors influencing changes in the QOL of study participants. Findings indicated that improvements in caregiver QOL after participating in the project could be explained by caregiver's employment status, increased global FQOL, and decreased caregiver stress and depression.

Stress and Quality of Life in Caregivers of Patients with Multiple Sclerosis.

Background and Objectives: Multiple sclerosis is a chronic demyelinating disease of the central nervous system. Individuals with multiple sclerosis may require daily care and support from caregivers due to the disease's progressive and unpredictable nature. However, the role of caregiving is not without its challenges, and caregivers themselves often face significant repercussions in terms of their quality of life, mental health, and stress levels. Our study aims to investigate the level of stress caregivers experience in their everyday life and the way stress affects their quality of life. Materials and Methods: We conducted a multicenter, cross-sectional study from 11 November 2023 to 20 March 2024 in healthcare units in Western Greece. All 96 participants were adult caregivers of patients diagnosed with multiple sclerosis (MS). We assessed caregivers' quality of life and stress levels using the 36-item Short Form Health Survey and Kingston Caregiver Stress Scale, respectively. Non-parametric tests (Spearman's rho test, Kruskal-Wallis and Mann-Whitney tests) were used to identify possible correlations between the aforementioned scales and between stress levels and caregiver characteristics. Results: Caregivers reported high stress, with an average KCSS score of 36.82 ± 0.851. The mean SF-36 physical component summary score (PCS) was 59.59 ± 2.77, whereas the mental component summary score (MCS) was 45.69 ± 2.32. Stress levels in the KCSS were negatively correlated with both PCS and MCS of SF-36 and female gender, education level, monthly income, limits of mobility, and patient's level of dependence were associated with higher levels of stress. Conclusions: Stress was found to be negatively connected with caregivers' quality of life, affecting both physical and mental health. Female caregivers, caregivers with a primary education level and a low monthly income, and caregivers of patients with serious illnesses who rely primarily on daily help were the most affected.

Factors associated with changes in the quality of life and family functioning scores of primary caregivers of children and young people with primary brain tumors in Karachi, Pakistan: a prospective cohort study

BackgroundThere are limited data available, particularly in low- and middle-income countries (LMICs), on the long-term quality of life (QoL) and family functioning of primary caregivers of children and young people (CYPs) affected by primary brain tumors (PBTs). This study aimed to assess the factors associated with the mean change in QoL and family functioning scores of primary caregivers of CYP patients with PBTs 12 months posttreatment.MethodsThis prospective cohort study enrolled CYPs aged 5–21 years with newly diagnosed PBTs and their primary caregivers. The study was carried out between November 2020 and July 2023. The primary caregivers of CYPs were recruited from two major tertiary care centers in Karachi, Pakistan. The primary caregivers QoL were assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of diagnosis and 12 months posttreatment. The data were analyzed with STATA version 12.ResultsForty-eight CYPs with newly diagnosed PBTs and their primary caregivers (46 mothers and 2 fathers) were enrolled. At 12 months posttreatment, 25 (52%) CYPs and their primary caregivers (mothers) were reassessed, and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decrease in mothers’ mean 12-month posttreatment QoL and family functioning scores was associated with CYP having posttreatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and with the financial burden associated with the CYP’s illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher posttreatment quality of life scores (beta = 0.4; 95% CI = 0.1, 0.6) and posttreatment higher verbal intelligence scores (beta = 0.1; 95% CI = 0.01, 0.3), the mothers’ QoL and family functioning scores were significantly greater.ConclusionWe found a significant decrease in QoL of mothers who had a high financial burden and whose CYP had posttreatment seizures. However, those whose CYPs had higher posttreatment verbal intelligence scores and quality of life scores had significantly greater QoL scores. Identification of the factors that influence primary caregivers QoL has the potential to aid in the development of targeted strategies to alleviate stressors and improve the overall quality of life for primary caregivers and their children who are at high risk.

Low resilience is associated with worse health-related quality of life in caregivers of service members and veterans with traumatic brain injury: a longitudinal study.

To examine [a] the association of caregiver health-related quality of life (HRQOL) and service member/veteran (SMV) neurobehavioral outcomes with caregiver resilience; [b] longitudinal change in resilience at the group and individual level; and [c] the magnitude of change at the individual level. Caregivers (N = 232) of SMVs with traumatic brain injury completed a resilience measure, and 18 caregiver HRQOL and SMV neurobehavioral outcome measures at a baseline evaluation and follow-up evaluation three years later. Caregivers were divided into two resilience groups at baseline and follow-up: [1] Low Resilience (≤ 45T, baseline n = 99, follow-up n = 93) and [2] High Resilience (> 45T, baseline n = 133, follow-up n = 139). At baseline and follow-up, significant effects were found between Low and High Resilience groups for the majority of outcome measures. There were no significant differences in resilience from baseline to follow-up at the group-mean level. At the individual level, caregivers were classified into four longitudinal resilience groups: [1] Persistently Low Resilience (Baseline + Follow-up = Low Resilience, n = 60), [2] Reduced Resilience (Baseline = High Resilience + Follow-up = Low Resilience, n = 33), [3] Improved Resilience (Baseline = Low Resilience + Follow-up = High Resilience, n = 39), and [4] Persistently High Resilience (Baseline + Follow-up = High Resilience, n = 100). From baseline to follow-up, approximately a third of the Reduced and Improved Resilience groups reported a meaningful change in resilience (≥ 10T). Nearly all of the Persistently High and Persistently Low Resilience groups did not report meaningful change in resilience (< 10T). Resilience was not a fixed state for all caregivers. Early intervention may stall the negative caregiving stress-health trajectory and improve caregiver resilience.

Impact of care–recipient relationship type on quality of life in caregivers of older adults with dementia over time

Abstract Background Dementia caregiving is a dynamic and multidimensional process. To gain a comprehensive understanding of informal caregiving for people living with dementia (PLWD), it is pivotal to assess the quality of life (QoL) of informal caregivers. Objective To evaluate whether the care–recipient relationship type predicts changes in the QoL of informal caregivers of PLWD over a two-year period. Methods This was a secondary analysis of longitudinal data. The data were drawn from two waves of linked data from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) (2015: NHATS R5 &amp; NSOC II; 2017: NHATS R7 &amp; NSOC III). Caregivers were categorized into spousal, adult–child, “other” caregiver and “multiple” caregivers. QoL was assessed through negative emotional burden (NEB), positive emotional benefits and social strain (SS). Generalized estimating equation modelling was used to examine changes in caregivers’ QoL outcomes across types of relationship over time. Results About, 882 caregivers were included who linked to 601 PLWD. After adjusting caregivers’ socio-demographics, “other” caregivers had lower risk of NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI 0.16, 0.85], respectively), and PLWD’s dementia status would not change these significance (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.31, P = 0.005, 95%CI [0.14, 0.71], respectively). Conclusions The study demonstrates that spousal caregivers face a higher risk of NEB and SS over time, underscoring the pressing need to offer accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses.

Motor and non-motor outcome in tremor dominant Parkinson’s disease after MR-guided focused ultrasound thalamotomy

Background and objectivesMagnetic Resonance-guided Focused Ultrasound (MRgFUS) is an emerging technique for the treatment of severe, medication-refractory tremor syndromes. We here report motor and non-motor outcomes 6 and 12 months after unilateral MRgFUS thalamotomy in tremor-dominant Parkinson’s disease (tdPD).Methods25 patients with tdPD underwent neuropsychological evaluation including standardized questionnaires of disability, quality of life (QoL), mood, anxiety, apathy, sleep disturbances, and cognition at baseline, 6 and 12 months after MRgFUS. Motor outcome was evaluated using the Clinical Rating Scale for Tremor (CRST) and Movement Disorder Society–Unified Parkinson’s Disease Rating Scale (MDS-UPDRS). In addition, side effects and QoL of family caregivers were assessed.Results12 months after MRgFUS significant improvements were evident in the tremor subscores. Patients with concomitant rest and postural tremor showed better tremor outcomes compared to patients with predominant rest tremor. There were no differences in the non-motor assessments. No cognitive decline was observed. Side effects were mostly transient (54%) and classified as mild (62%). No changes in the caregivers' QoL could be observed.ConclusionWe found no changes in mood, anxiety, apathy, sleep, cognition or persistent worsening of gait disturbances after unilateral MRgFUS thalamotomy in tdPD. Concomitant postural tremors responded better to treatment than predominant rest tremors.

Quality of Life and Its Associated Correlates of Parents of Children on the Autism Spectrum in Singapore.

This cross-sectional study aimed to assess Quality of life (QoL) of parents of children on the autism spectrum in Singapore and identify its associated factors. Parents of children (age ≥ 5years) completed the Quality of Life in Autism scale which measures parental self-rated QoL (higher scores denote greater QoL), and the perceived impact of the child's autism-related behaviors on parents (higher scores denote lesser impact). Information on the child's degree of autism (measured by the Social Responsiveness Scale, second edition [SRS-2]), community and social participation and cognitive and adaptive functioning were also obtained. Participants were 86 parents with mean child age 6.3years (SD 1.0). Univariate analysis results revealed greater participation in community and social events to be two modifiable factors associated with higher parental QoL. However, these factors were not found to be significant in the multivariate model. Higher autism features (represented by higher parent-rated SRS scores) was associated with a greater perceived impact of the child's behaviors by parents in both univariate and multivariate analyses. Of note, child's cognitive or adaptive skills were not significantly associated with either QoL measure. Equipping parents to handle autism-related behaviors can be useful to reduce their impact on parental QoL. Facilitating community participation for these children may positively influence caregiver QoL as well.

Impact evaluation of a cash-plus programme for children with disabilities in the Xiengkhouang Province in Lao PDR: study protocol for a non-randomised controlled trial

IntroductionMore than 170 countries have implemented disability-targeted social protection programmes, although few have been rigorously evaluated. Consequently, a non-randomised controlled trial is being conducted of a pilot ‘cash-plus’ programme implemented...

A chain mediation model reveals the association between family sense of coherence and quality of life in caregivers of advanced cancer patients

Caregivers of advanced cancer patients face challenges impacting their quality of life (QoL). While evidence suggests that family sense of coherence (FSOC) can enhance individual psychological well-being and reduce distress symptoms, the precise mechanism through which FSOC improves caregivers' QoL remains unclear. This study aimed to explore the relationships among FSOC, psychological resilience, psychological distress, and QoL in primary caregivers of advanced cancer patients. A cross-sectional observational study was undertaken from June 2020 to March 2021 across five tertiary hospitals in China. Instruments included a general characteristic questionnaire, the Family Sense of Coherence Scale, the Patient Health Questionnaire-4, the 10-item Connor–Davidson Resilience Scale, and the 8-item SF-8 health survey. Pearson’s correlation and chain mediation analyses were performed using IBM SPSS (version 21) and PROCESS macro (version 3.4). Out of 290 valid questionnaires, results demonstrated that FSOC directly and positively influences caregivers' QoL. Psychological distress partially mediated the FSOC-QoL association, with paths "FSOC-psychological distress-QoL" and "FSOC-psychological resilience-psychological distress-QoL" contributing 43.08% and 6.72% of the total effect, respectively. Furthermore, this study distinguished physical and mental aspects of QoL, confirming both conform to the chain mediation model. FSOC impacts caregivers' QoL directly and indirectly through the mediation of psychological distress and the chain mediation effect of "psychological resilience-psychological distress". These insights enhance our understanding of the complex interplay between FSOC and QoL, underscoring the potential benefits of bolstering FSOC to strengthen caregiver resilience, alleviate distress, and ultimately elevate their QoL.